Where will my appointment be?

A survey of cleft services in the UK in 1998 revealed 57 different centres offering cleft care. This survey revealed that few of these centres were able to offer the full range of services that children needed. It was decided that better treatment could be provided by a specialist cleft service for each Region.

We are the specialist service for theNorth West,North Walesand the Isle of Man. This means that you will need to travel to the specialist centres for surgery at Royal Manchester Children’s Hospital or Alder Hey Children’s Hospital inLiverpool. Clinics are organised at these hospitals, but we also organise clinics in North Wales (Ysbyty Gwynedd, Maelor and Glan Clwyd) andPrestonto offer a service closer to home, but these clinics are not as frequent.

We aim for families to be seen close to home; however, this is not possible for all aspects of care.  Sometimes you may need to travel to one of our main centres to benefit from specialist assessment, treatment or equipment.

There are a lot of different specialists in the cleft team. Do I meet them all at once?

In the first year you are likely to have most contact with your Clinical Nurse Specialist, Audiology, your Cleft Surgeon and Ward Staff. Speech and Language Therapists are available in clinic to answer your questions and offer early advice. If your child’s palate is involved, Speech and Language Therapy will assess your child’s speech for the first time at 18 months of age. Psychologists can become involved at any time if you feel you need their support. A Paediatric Dentist or Dental Therapist will also be involved in the early years, and as your child grows up other specialists from the dental and orthodontic teams may become involved.

Confidentiality clause (sharing of information within the team) see CNS leaflet

All information that you share with us is treated confidentially unless there are concerns that some-one’s safety is at risk.

Letters are exchanged between members of the team so that we can provide you with the best quality care. Copies of letters are also sent to you, your child’s GP (family doctor), Health Visitor, local paediatrician and other members of the cleft team. If there is information you do not wish to be shared with the rest of the team then you can talk to us about this.

What information will be collected about my child

We will record your child’s treatment in different ways, including written records, photographs, and video recordings of your child’s speech if their palate is involved. We may also take dental impressions and x-rays as your child grows older, which will help us plan your child’s care.

One of the recommendations of the report in 1998 was that there should be a special register of children born with a cleft. This is called the Crane Database. This is so that we can get an accurate picture of how many children are born with a cleft, and also to record measures of your child’s treatment. This is part of a national audit process, to help ensure that all children with a cleft receive high quality care. We will ask your permission to include your child’s treatment measures on this special register, in order to report trends in cleft care. Your child will not be named in any of these reports.

Will students be involved in my appointments?

As the Cleft Team is hosted by teaching hospitals, you may be asked if students can be present during your appointment. This is a way that students learn to care for families affected by cleft, but you can choose not to have students present. This will not affect the care of your child.

Will my child be involved in research?

As a network we have benefited from research that has been done into cleft care, and this has allowed us to answer many of your questions. We continue to try to answer questions about cleft care, and so we may ask you if you would like to be involved with research projects as your child grow up. Your involvement will help us to understand different aspects of cleft care, but we will always ask your permission before involving your child, and your child’s care will not be affected if you choose not to be involved.

Who makes decisions about treatment?

As your child grows up we will increasingly involve him/her in options available to them. You can help by encouraging your child to ask questions of the team at a very early age. We are always interested how we can help your child learn about the condition and meet their needs growing from childhood into adulthood.

Where can I find more information?

Cleft Lip and Palate Association (CLAPA)

First Floor,
GreenManTower,
332b Goswell Rd,
London
EC1V 7LQ

Tel: 0207 833 4883 • Fax 020 7833 5999

E-mail: info@clapa.com • web: www.clapa.com

Changing Faces

The Squire Centre,
33-37 University Street,
London,
WC1E 6JN

Email: info@changingfaces.org.uk
Website: www.changingfaces.org.uk